Pretty much no impairment is as simple as abled people think it is.
People are taught to believe that disability is a simple “Can’t”. Can’t walk. Can’t talk. Can’t hear. Can’t see. An ability is just excised and no longer exists, if it ever did.
In reality, it’s rarely that simple.
It’s “I can sort of do x thing sometimes, but I get muscle spasms making it very dangerous or impossible to do it reliably or safely”. Or “I can do x thing but it causes me so much pain I will be unable to do anything else for hours or days after doing it”. Or “I can do x thing but I constantly injure myself doing it because of lack of muscle control”. Or “I can do x thing but so badly I functionally can’t do it two inches beyond my face, but now I have a mobile phone I can put up to my face so I can do it in certain very specific circumstances”.
None of these things mean someone isn’t disabled. And if you think it does, then it’s *your* ideas about disability that need to change.
The reason disabled people end up saying “can’t” when the reality is more complex is because people don’t trust our boundaries. They force us to injure ourselves instead of accommodating, or use energy that means we have none left to do *anything* else we need to do for the rest of the day. Or week. Or month.
Abled people need to start trusting disabled people, or you need to shut up, get out of any situation where you have power over us, and provide someone who will. Those are the only options.
The way we are expected to live in a performative hell of the making of more privileged people who then turn around and criticise us for not suffering in the precise way they have decided we should is genuinely nothing but ridiculous.
Just stop.
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CWs for pregnancy loss, eugenics, disableism, medical trauma
Poetrytober day five
“Oh, you must be Catholic,” they said
When I told them there was no chance I’d be aborting a disabled foetus.
They did not even exist yet
And they never really did; it turned out
They were only a ghost of cells and hopes
And hurt and desperate longing
Of both of us
concentrated in a place that only cramped and bled and bled
And could not cradle and keep them as I,
As we
So desperately wanted
Washed away on a blood-tide into
The oblivion of never-being.
And yet even in that state of desperate longing that
Could never conjure into full being
I had to defend their right to be
From even the chance.
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say what you want, but to me Disney's Hunchback of Notre Dame is so fascinating particularly *because* the socially isolated and disabled main character doesn't get the girl.
Yeah, all the conventionally attractive male Disney heros get to have a girl as a prize, but Quasi-modo gets something far more valuable that truely can be *his* in the first place:
He gets a life of his own.
He gets the freedom to go outside, grow, learn who he is as a person in a social context. He gets to meet *himself*, learn who he is when he's not imprisoned and tortured by Frollo.
Getting the girl wouldn't fix Quasi-modo, even if he wants that to be true at first. What he really needs is to seize his own life, and not rely on other people to give him salvation- which is the trap Frollo fell into when he saw the source of his damnation solely in Esmeralda, and saw himself as the sole source of salvation for her.
Critics have often said that it was an awkward scene when after the finale Quasi-modo joins the hands of Phoebus and Esmeralda to give them his blessings. And I guess you can feel that way if you see Esmeralda as the *prize* which rightfully *belongs* to the main character no matter who he is. And I don't care if Disney wrote it the way they did out of ableism/disableism, I think it's a compelling and sound ending for Quasi-Modo to embark on a journey of self-development. That's a thing many other male Disney heros would profit from too, haha.
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ARE DISSABLED PEOPLE LAZY? COULD REALLY DO BETTER IF THEY TRIED HARDER? This is an example of an average bad week, like 6/10 bad on mental health and 5/10 on the physical level. Oh yea it gets so much worst! Read this and tell me how I could have improved.
MAY 2023
Sat 29.04.23
-Asthma bad all night. I coughed myself awake so often I didn't get any deep sleep.
-Fibromyalgia not happy about this, and is flaring up on its way to STOPPING FLARING up instead! 🤬 Joy! So now going to pee has extra general pain added to it.
- Allergies & Sinus bad. My nose runs non stop. Used 1/2 roll of toilet paper blowing my nose just today. And no, I don't like waisting things. Throwing meds at it.
-Managed to work with my carer, sorting paperwork. I can't help with much else anymore. I don't have the hand strength to cut a carrot. That's annoying as taking away from my autonomy.
Sun 30.04.23
- Allergies & Sinus still bad with non stop daily headaches, with migraine sometimes.
-Fibromyralgia flare. Pain feels like I feel down badement cement stairs or when I had major surgery on day 3 with 5 days hospital stay. I'm in too much pain to eat. Exhaustion worst than Covid & Pneumonia!
-Asthma bad. I have to rest for 1 minute every 10-15 meters I walk. Going to the loo takes 5 breaks.
- Urinary incontinence dissability related not happy about so many breaks to get TO the loo. I need buy more trousers! (I used 3 in one day twice this week)
- I'm in so much exhaustion & pain I can't even face watching TV. Strong painkillers increased. I'm not happy. I was hoping to decrease them this week!
Mon 01.05.23
-Migraine.
-Sinus inflamed for past 4 weeks. Related to but not only cause of migraine. I'm a migraine sufferer.
-Fibromyalgia medium flare. Hands hurt as well as eveywere else. A plate is heavy to lift. I can't stab potatoes to zap them in microwave by myself.
-Hayfever slightly improving.
-If I didn't have a carer coming to help me with a wash, I don't know how I would cope.She helped more today. She's so nice. People don't appreciate them enough.
-Concerned how I'll make hospital appointment of Thursday. And got builders in tomorrow.
Tuesday 02.05.23
-Migraine at night.
-All body pain bad. Been worst before though.
-Builders poped in to say they'll be back tomorrow. And no neither owner nor estate agents told them about all the work needing doing.
- This is in fact my comparativly, the "best day" to date. I can't sit in a chair re pain. And I have a high pain threshold. Had major surgery and got up by myself the next day when everyone else did on the 3rd day with help. Nurses said it was shocking to see me trot - carefully - about.
- Hospital appointment of tomorrow changed for latter on. It's not a vital one.
-District Nurse popped in to assess if I need to worry re swealing in legs. I'll have to go to the specialist clinic after all.
-Blood Pressure still high & Pulse going nuts. Say hi to all types of allergies as a possible cause! I take the strongest anti histamin, plus 6 over the counter allergy tablets daily. Yep, the specialist doctors advised that. It stop skin for literally falling off and other horror stories!
Wed 03.05.23
-Vomited blood all night (5hrs of hurling on off) from ulcer, blood clots included! Yuck! 3rd time in 1 month.
-Day Migraine following as haven't been able to drink much
-Im past normal exhausted as part of Fibromyalgia. It feels like I did a 14hr shift and haven't slep the next 2 nights. (Yes, I've done that in the past. Joy of nursing & midwifery whilst having dissabilities)
- Spoke to GP, meds increased. I don't want another endoscopy. Don't see what else it will tell us. It's costly to the NHS, I'm going to be in so much pain for at least 2 weeks after due to dissability, not the test. Urinary incontinence will be a pain. I'm not even for resuscitation (DNR) anyways.
-Not hungry. Disordered eating means it will kick in if I can't eat at all today. Gods even cake don't sound appealing!
- Builders back. Same thing, back tomorrow instead. But now they got the list of job.
-District Nurse decided I need compression stockings! My severe eczema might not like the extra heat in summer! & Scratchy material.
-Migraine afternoon - nightime.
-Did eat eventually. Yea me!
Thursday 04.05.23
-Food helped with migraine & dissorted eating.
- Pain and extreme exhaustion same. I can't hold a plate of food.
- Severe anxiety started in afternoon after flat owner demanding I get the garden clean that night. Message was passed to me by builder at around 4.40pm. to be done by tomorrow morning. Oh yea, I'm dissabled with poor balance, walks some 15-20 meter with 2 stick, uses wheelchair otherwise. And it would get dark even if I miraculously find someone for, ... work that's not urgent! And oh yes, there's no place to eat at the kitchen table due to building work. Like that's not a priority after builders leave rather than garden. Also. Thunder and rain so bad, I though thunder had struck nearby.
-Complex Post Traumatic Stress Disorder (C-PTSD) few times last night (originates from past child abuse) but attacks due to the way the flat owner and estates agent treats me.
Friday 05.05.23
-Irritable Bowel Syndrome (IBS) exacerbated since around 2am started with the stress.
- Headaches back
- Severe anxiety rising progressively
- C-PTSD flash back early morning. Good thing I know how to manage it.
- I ate with carer, yea! Well she made me eat.
Saturday 06.05.23
-Anxiety still high
-C-PTSD same high during day, not typical of abuse. Definitely flat owner & Estates Agent related.
Sunday 07.05.23
- Actively managing the mental health side of things.
- Bad Heaches day time
- Friend brought me yummy KFC. Could only eat a tiny bit. Oh great, that's Dissordered Eating not happy with all the stress!
- Migrainy headach lasted 2-3 hrs. Resolved with management.
-Asthma attack in evening for over 2hrs. Was so rough couldn't do lung capacity measurement until finally calmed down.
- I won't be able to finish my KFC now. I'm pissed off. I'm so tired of juggling several deseases. It wouldn't be so bad of people acted like human being.
So. Do you still think I'm leisurely lying around having a relaxing time as a dissabled person?
Did you realise that it takes managing one thing after another everyday?
So everyone can do better of they "really wanted"? I really wanted to not loose my mortgage and dog. It's my dog I missed the most, not even one of my things. From a Midwife I became homeless. From working 16hrs or work followed by Union Rep work (IE talking to staff, not official meetings before you quote the law) I'm now not able to eat independently at times, or wash alone now. I'm still acting? Have a good, lazy life? You want to swap?
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Continuing this little vent-fest of mine, I really hate how people will just... absorb whatever misinformation they hear about DID. Like, sure, I get it, you want to believe the person who has the stigmatized disorder when they talk about it. But sometimes people with the disorder are just fucking wrong, too. Sometimes we also need to unlearn our biases, incorrect assumptions, and ideas that sound right but actually aren't. We're not a perfectly unbiased group. We're not granted omnipresence about every presentation and facet of our disorder.
And it frustrates me so much because it's always framed as though the people correcting the misinformation are evil, ableist bigots. As if we're the problem and not trying to handle a situation before it gets out of hand and people get hurt. They'll always absorb the misinformation because the person spreading it has DID but anyone fucking correcting it is "clocked" as a faker lying for unspecified malicious reasons. Omfg. Grow the fuck up and admit that you just uncritically absorbed the first thing you heard about whatever aspect of the disorder we're talking about this time. Grow the fuck up and accept that DID is complex and involves a lot of phenomena that might sound far-fetched at first. Especially when it comes to the complex ways we might be traumatized and show the effects of our trauma, are you kidding me. You are not immune to misinformation. You are not immune to exclusionism. You are not immune to hurting people in the name of protecting them.
I did eventually end up reaching out to the person who reblogged that post calling a specific subset of systems, as well as a specific form of abuse, a conspiracy theory. No word back as of yet. But I'm going to try to let it go and focus on my own projects for right now, because that is a ball of yarn I am not going to untangle overnight, but I can at least start sharpening the scissors for someone else to cut through it one day. Confrontation is not my strong suit, and I'm tired of being treated like shit for trying to correct misinformation about the disorder I work to destigmatize. Best to focus my efforts elsewhere.
If you've dealt with this kind of thing, seen this kind of post where people will spread the most obviously incorrect shit because they don't want to accept all the complexities and unusualities of DID, my heart goes out to you. It sucks. But I refuse to believe that it's going to be this way forever. No matter how fruitless it may seem, we are making headway in awareness, understanding, and acceptance. Some asshats who want to stick their head in the sand and only accept the most simplified, sanitized version of this messy and varied disorder are not going to stop us from making a place in the world for ourselves.
Keep your head high and your mind open. We're gonna make it through this shit.
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